The Reality of Living with an Auto-Immune Disease

You’d be amazed at how many illnesses fall under the auto-immunity umbrella and everyone probably knows someone with one – they are much more common than you might have realized.

What exactly is an auto-immune disease?

An autoimmune disease develops when your immune system, which defends your body against disease, decides your healthy cells are foreign. As a result, your immune system attacks healthy cells. Depending on the type, an autoimmune disease can affect one or many different types of body tissue. It can also cause abnormal organ growth and changes in organ function.

There are over 80 diseases that are classed as auto-immune and I’ll put money on you having heard of at least one of these common ones:

rheumatoid arthritis

lupus

celiac disease

vitiligo

scleroderma

psoriasis

inflammatory bowel diseases

Hashimoto’s disease

Addison’s disease

Graves’ disease

reactive arthritis

type 1 diabetes

What does having one mean though? Because it sounds pretty intense right – your body attacking the healthy cells…it’s the kind of thing that should leave you in hospital right? Well I promise you it’s nothing quite that dramatic (don’t get me wrong, badly managed – just like anything else – and there is a risk, but for the most part they are fairly manageable…incurable but manageable).

A lot of people ask questions when they find out you’re sick, because it’s true, most of us don’t “look sick”; they want to know what it’s like to actually be the not so proud owner of one of these diseases; what does it mean and why can’t we do stuff? Well, let me tell you.

Some mornings I wake up and feel brilliant, I get up, shower, have breakfast and get ready to take on the day; other mornings I wake up from the couple of hours of sleep I managed to get, feeling like a Mac truck has run over me in the night and the idea of even turning over in my now hideously uncomfortable bed is just way too much to even consider. I’m aching everywhere – even in places I didn’t think could ache – and my energy levels are so non-existent they may as well be unicorns.

Even on the bad days though I still get up…even if it takes an hour to do it, because I know shit has to get done and no one else is going to do it. Some days I shower – other days the thought of wasting energy just trying to get in and out of the bath is too much, plus even if I could get there the chances are I would get half way through washing my hair and burn out, then I’m stuck with tired arms and a soapy head.

It’s then time to eat and I have to decide between food that’s easy and goes straight from cupboard to gob but will probably make me hurt, flare or pass out in an hour or spending some time making something nutritious that ticks all the boxes of what I should and shouldn’t be eating in order to get through the next three hours…

I’m pretty much always starving. Actually that’s not entirely true, I go from not wanting to eat to absolutely ravenous in 0.6 seconds flat and then it’s a game of “find the sick girl food she can eat before she hurts you”.

By the time I do get food I can’t eat a lot of it, because my body – like a moody toddler – just decides “no, you know what, I wasn’t really that hungry, I’m good now.” only to repeat the whole thing again three hours later.

Even on the best days when I feel like I can take on the world like a normal 25 year old I find myself waning by the afternoon, like a bike tyre with a tiny hole, slowly deflating the further you ride it until you just can’t push it any further.

Now having an auto-immune disease tends to turn you into a bit of a hermit, as I’m sure you can imagine. The thought of socializing, getting ready or leaving the house, is incredibly daunting – what if I run out of juice, what if there’s no where to sit, what if I can’t eat anything, what if people want me to dance or – worse still – take part in some sort of activity…no, no, no. Staying home is much safer.

I know it sounds ridiculous, but that is often our reality…sometimes you have to fight it because obviously staying at home in bed everyday is not particularly healthy, nor is it socially acceptable but there are times where I do have to just tell people no and hope they understand.

Oh! Then there’s the brain fog, don’t ever try talk to me coherently on a bad day, I won’t make sense.

There are times where I’ll start a conversation half way through because in my head I had already said the first part but I haven’t, it’s a lie, and people look at me very strangely (so if I ask you if I’ve already said something don’t be surprised, sometimes I need to check these things). Other times I just loose all semblance of thought and go absolutely blank – it could be mind sentence or in the middle of doing something, I just can’t fathom where I was going with it. Don’t get me started on mixing up words either, there have been some gems – none of which I can actually recall (case and point).
It doesn’t just effect my ability to speak and think though, brain fog increases my already embarrassing levels of clumsiness and it leaves me struggling to focus on even the simplest of tasks – try making a cup of tea in a fog: forget to turn kettle on, grab the wrong tea bag, stand and stare at tea choices for ten minutes, realize you need to turn kettle on, forget to check if there’s milk, go to check the fridge and forget you boiled the kettle in the first place, walk away and start something else…an hour later someone else walks into the kitchen and makes you your abandoned shambles of a tea…you forget to drink it. I kid you not.

Then of course there is what happens when I get sick…cold and flu season, seasonal changes, kids going back to school, colleagues returning from holidays, I would like to say on behalf of all of us with auto-immune conditions: we hate you.

You might think you feel bad when you’ve got the sniffles but that’s nothing compared to an auto-immune cold. My mum always used to tell me to quit the dying swan act when I was sick as a kid because I always claimed to be dying but now I swan, and I swan hard – and not by choice either.

Everything hurts, everything is blocked, everything is hot then cold, no amount of over-the-counter meds work in the time they are supposed to and I just resign myself to riding it out and crying – which I can’t even do properly because I actually cannot breathe.

Eventually I get better though, it passes, what ever was making me sick…then I’m just left with the original illness, but at least it’s the devil I know.

Now when it comes to sleeping I get no respite. Despite being tired all day by the time it comes to bed I don’t always get the best nights kip. Sure, I find it fairly easy to fall asleep but during a flare I wake up between 4 and 5am every day, more exhausted than when I shut my eyes, I toss and turn and I have the worst dreams. In between flares my sleep is okay, never overly restful or as long as I might like but that’s more than most people can say.

Sleeping during the day comes easily sometimes, and it doesn’t have much effect on my nighttimes but it still means three or four hours wasted. But I suppose it’s what my body wants.

Now you may be wondering at this point how and why and I don’t blame you. Unless you too suffer from chronic pain and illness you can never understand what someone with an auto-immune disease deals with day-to-day and we wouldn’t wish it on you in a million years.

What it all boils down to is that there isn’t anything we can do about it except find ways to manage it that work for us, until someone finds a way to repair our immune systems it’s just about learning to live with it, finding people to help you, pushing through every day and making sure that you give yourself time to rest, love yourself and look after your body no matter how broken it may be.

22 comments

I’ve found the easiest way to deal with it is to stop being sad about it, I can’t do anything to cure it I can just work on making everyday easier on myself and less painful, sure there are days where it is unbearable but I’ve come to accept that I’m always going to be sick and I’ve found it’s easiest to laugh at some of the sillier side effects and manage the more serious ones. I know it’s easier said than done but it makes things a lot easier if you just embrace it, find what works for you, I now have no issue telling people where they can shove it if they try to make me do things on a bad day and won’t accept no for an answer, I used to be embarrassed of it but I realized there not much I can do other than not hurt myself more! I am glad though that you found the article relatable and I’m not just chatting nonsense!

[…] for my predisposition to thyroid problems; as if when I was born she actively decided to hand me an auto-immune disease like some sort of family heirloom…I would never, not in a million years blame either of my […]

Agree with everything you have said here.. Living a normal life but not pushing ourselves harder just to prove that I can do everything is something a person with auto immune disease should accept and never feel ashamed of.

I’m sorry to hear that your days are riddled with so many challenges that most of us take for granted. However, I can see from your delightful prose and clever memes that you have found a way to thrive. Which suggests (and inspires) that we mere mortals have a lot of catching up to do 😉

I have a friend with autoimmune disease .. and my goodness, some of her days are really a struggle. She’s such an inspiration to me because through it all she’s remained positive and determined to make every day the best it can be. When I feel complainy .. I think of her and reset my attitude

Thats my aim and thank you for your kind words 😊 it is hard to understand when you’ve never experienced it but the number of people suffering is crazy and it helps when people have a little bit of an idea

I know someone who suffers from this and it’s definitely a challenge. On somedays she’s on top of the world and then there are those dark days when she couldn’t stand up. I wouldn’t wish it on anyone either and I hope that you have more bright days than dark.

I have a close friend with lupus and she says it’s like an invisible disease. People will always tell her “but you don’t look sick.” it seems hard to understand if you’ve never dealt with it, so thank you for sharing your experience with us!